For those who hear voices, the doubt in our capabilities from medical providers and academics is a central obstacle to quality care. Having helped the hearing voices community at a national level, I have often seen how strategies shared in peer support and community forums have significantly improved quality-of-life for those of us in crisis.
Understanding What Hearing Voices Means
Perspectives, agreements, and choices on how to interact with voices can eliminate challenges in focusing attention, feeling threatened by distressing voices, keeping up self-esteem and happiness, and avoiding confusion. With 5-15% of adults hearing voices in their lifetime, of course our community will have developed successful tools for mastering our own experience. Instead of building a collective knowledge of our community’s strategies, however, providers and academics tend to focus on pharmacological solutions, which some studies suggest do not even benefit the voice-hearer (although many other studies do suggest benefit).
While there is progress being made in psychotherapy, with new solutions such as IFS (Internal Family Systems therapy) and AVATAR Therapy, the continued dismissal of lived-experience-strategies contributes to a large amount of otherwise preventable suffering for those who hear voices.
Not a Sign of Mental Illness
Let us be clear: hearing voices is not in itself a sign of mental illness. In many other societies, hearing voices is a positive experience, and there is significant research that local culture plays a large role. Even sub-communities within the U.S. that perceive voices not as a medical illness, such as clairaudient psychics, tend to have high-quality lives without the same rate of crisis.
Further, regardless of one’s culture or experience, controlling and influencing voices is possible, and is a skill that can be taught, developed, and mastered. Against this backdrop, I have heard many horror stories of voice-hearers pressured into medications and hospitalizations, and then being stuck with the bill for a ‘treatment’ that did little to help them.
Even though most members of our community are not in an active crisis or confusion, voice-hearers and their families are also “prescribed hopelessness,” if not by medical authorities then by society at large. Ironically, the expectations that voices will be hostile, specifically within the medical model, subconsciously creates hostile character traits for one’s voices. This seems to be lost within the broader conversation.
A Different Approach
Instead of having to reinvent the tools and strategies for beating our circumstance, a body of voice-hearers’ collective knowledge would drastically improve quality of care for our community. Building such a body of knowledge is not an impossible task, with participating individuals simply writing down each problem and solution as it happens.
Spreading these answers, as well as determining their usefulness across frameworks and individual experiences, can be coordinated by providers, academics, and the organized communities that support voice-hearers. The main obstacle to this body of collective knowledge is the pervasive view of voice-hearers as confused victims with nothing to contribute even on the topic of our greatest mastery: our own lives.
Many believe that if connected into community, voice-hearers would rapidly deteriorate in rationality and insight. Of course, the truth is that hearing-voices-groups have always been helpful through giving advice and supporting each other. Compared to having a support structure while navigating voices, isolation from physical people creates a lack of diverse perspectives: leading to inconsistent beliefs and potentially damaging behaviors.
My Experience
Looking back, there were so many priceless strategies that would have created a much higher quality life for me. For example, if I had known that some of my hostile voices were motivated by anger, I would have helped them find peace sooner instead of escalating conflict. For the voices who are driven by an agenda for our voice ecosystem, I would have found a way to combine our goals and become friends years earlier.
As another example, even a simple tool of sharing my internal experiences with “degrees of vagueness” would have helped me stay close to my community. For example, if you tell others about a fight with a specific demon, then people will think that you are strange. If you instead say the vaguer belief that Earth is a battleground between angels and demons, then you would be in a community of over a billion people. In this way, speaking with a degree of vagueness allows voice hearers to keep engaging with the physical world instead of separating the stories of their voices from their community. Key skills such as these, or how to negotiate and secure agreements with my voices, would have helped me drastically as I was starting my voice-hearing journey.
Better Providers Needed
Altogether, one core issue of quality care for voice-hearers-in-crisis stems from the lack of “lived experience” leaders representing the community in academic and provider circles. The skills that we develop are valuable, and should grow into collective knowledge. As a step in this direction, I have published my own toolkit, Life with Voices: A Guide for Harmony, providing specific techniques for navigating hostile voices and confusing beliefs. Through my work with HVN-USA and iSPS-US, I have seen just how valuable some of these strategies have been for helping others find harmony and higher-quality lifestyles. I am, however, far from the only voice-hearer who has been diligent in writing down the answers to my problems.
If academics, providers, and society at large would find the humility to change their preconceived notions about us, they would see just how much voice-hearers can contribute to the conversation. For more information, please visit my website lifewithvoices.com. More importantly, be honest with yourself on correcting any prejudice that you feel towards voice-hearers.
Thank you for your part in lessening the suffering of my community.
Dmitriy’s journey to help the hearing voices community has earned him leadership roles in 4 nonprofits (Hearing Voices Network USA
, iSPS-US, HVN-NYC, and NYC PWC), an advisory role for the Yale Cope Project, and to being a coach, facilitator, and advocate for the hearing voices community. He is now also the author of the recently completed Life with Voices: A Guide for Harmony.
His main projects include celebrating the stories of those with lived experience, and creating a forum where those with lived experience can share their tools and strategies for improving quality-of-life.
From the Editor:
This article goes back a bit but is a great example of why patients and caregivers need to be trusted and listened to.
